To IVIG or not to IVIG - that is the question
 

I was approved for a 3 month IVIG trial after a great response to a high dose, 6 month course of prednisone (great bc eyes were wide open, had amazing energy and no slurred speech....horrendous in other ways; most notably I got every infection known to mankind so it wasn't sustainable).

Am I crazy to pass on IVIG? I'm gun-shy after pred bc it was truly very difficult and while I know theoretically IVIG is kinder in terms of side effects I've also heard a few horror stories.

The only other option, according to my dr, is methotrexate or imuran.

My main symptom are major ptosis, weakness in facial muscles and crazy, total body, debilitating fatigue (feels like energy has been siphoned out of me).

I do well in the am but afternoon/nighttime it's all over. It's like I'm 2 diff ppl. Seriously, I think my neighbor thinks I'm 2 ppl. as my appearance changes so much w the facial weakness. I look like I'm baked and drugged out. I've read IVIG doesn't help ptosis. Is that true???

Can you tell me if u have done IVIG and which symptom it most helped?

Thank you!!!!

I have been getting IVIG for 3 years+. I get a headache sometimes but that's my fault for not drinking enough fluids. I am one of the lucky ones that can take a fast rate so my treatments take 2 hours. I get them about every 3-4 months. What it does for me is improve my overall strength. After 3-4 months I get real rundown and weak. So it gives me a boost. I get 2 treatments a week for about 8 weeks (16 total).

I'm not sure it helps ptosis or facial issues. Do you take Mestinon? As for Imuran it made me very sick and I lost 35 pounds. We switched to Cellcept with no side effects.
Mike

I had no idea how sick I was until I did IVIG and finally felt semi normal again! I feel it when it wears off and I get floppy weak all over... can't swallow eyelids droop etc... my friends and cowworkers always know when I'm due for IVIG as my face looks bad when I'm due.. I have gotten aseptic meningitis due to too fast of a rate, but it was just pain and aches.. not "serious" otherwise.. we control it by controllling the rate, and I am a big IVIG advocate, as I got my life back! I do it every 2-3 weeks

I get IVIG every 2 weeks, for a year now.

Only side effect I have had was the headache (3 nights in a row no sleep and nothing touched it).

Please just do as they say and DRINK plenty of water!!

I buy an extra gallon every other sunday night and take it with me on the way to ivig.

I start slugging it on the drive over and while in the ivig treatment (I'm usually there 4 hours) I will consume the rest of that gallon.

I just had my first dose of IVIG 10 days ago. I started feeling better the second day. Had two days at 4 hours each, will do one four hour dose monthly in the future.

How nice it is to feel better! My arm and leg weakness is minimal. I can now read to my daughter without my throat getting weak/not being able to talk. Before I could go maybe 10 minutes, now we read for half an hour or more. Same goes for meetings at work. I don't yawn in people's faces anymore, and don't have to take a break from talking. I don't get fatigued running errands or doing housework.

Yesterday my arms started feeling a bit weak doing laundry and today while washing my hair. So I wonder if it's wearing off already, but I still feel good.

Cons for me: 2 days of head/neck ache, flu-like symptoms starting morning after first dose. Tylenol took care of it mostly.

Suggestions: don't drink caffeine before going, as it dilates your veins. Drink lots of water! My poor infusion nurse had to stick me 6 times. She was doing her job fine, but my body was not cooperating :)

Best wishes,
Susan

Even thou I finished the steroids in July I guess I still had the benefit up until recently. Everything is coming undone and my eyes/energy are not cooperating AT ALL so I am heavily leaning towards giving this a try.

Mesty doesnt do much for me - even for ptosis.:confused:

Re IVIG - I was approved only for home infusions. Do you get it at home or are you all in a clinical setting?

Thx again for valuable feedback!

I get mine at in infusion center, but boy I wish I could get it in the comfort of my own home! It's not fun to have to drive home afterwards, or have to go to the bathroom so much (I drink tons of water) at the center.. the plus side though is that if one nurse has a hard time getting my IV there are other nurses there that can try.. pro's and con's to both I suppose! Good luck! I go in tomorrow for my "re loading" dose!

I have been getting IVIG every 2 weeks for 2 days for 3 1/2 years. I do not have side effects as long as I drink enough. I go to the hospital infusion center. I still take large doses of other meds but my quality of life is excellent compared to when I started. I recommend giving it a try - you can always decide to not do it. You are approved now insurance wise and you do not know what is given to happen with the new healthcare system in the future.

I get mine at home, and have for over a decade. It's so much easier to have everything you need at your fingertips. I also think it's a lot safer as far as infections go.

I start IVIG on Monday, for 5 days, They are trying gammunex this time. gammagard gave me a bad reaction. i will let you know how it goes.

I am up to 120mg x4 of mestinon and 180 at night because of breathing issues. The neuro does not think it is safe to raise the mestinon any higher.

kathie